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And now on to the Neurologist....

This might be a tad long so thanks for reading in advance...

Went to my Rheumy yesterday.. things are ok. He took me off all my NSAIDS due to severe abdominal pain and we are waiting until I see the gastro to decide if I can take them again. He thinks I may have an ulcer or some intestinal issue. The joint pain has been so severe off the Lodine so he prescribed oxymorphone. While there I went over a lot of my recent symptoms: balance issues, falling and tripping, cognitive issues (I'm getting confused very easy now), I have a slight stutter sometimes, and sometimes I have difficulty spitting the words out. I open my mouth to talk but it's almost as if the words are caught in my throat. I've also been having constant dizziness that doesn't feel like vertigo. He referred me to a neuro and I can't get in until April

Now the interesting thing is that I was diagnosed with Graves in 2007 and Celiacs in 2008 and both times I had the EXACT same symptoms I mentioned above. In fact, if I didn't have the joint pain, rashes and hair loss, if feels like deja vu from 2007 and 2008. Both of those disease presented the exact same way.. dizziness, lightheadedness, confusion, stuttering, tripping and difficulty processing information. For my thyroid they put me on the lowest dosage of methamizole and my thryroid levels were normal within weeks. I have been off any thyroid meds for 4 years which is highly unusual for the disease. With the Celiacs I saw every type of doctor and had 60 vials of blood drawn in 3 mos before getting a dx. I saw a neuro then who did tons of tests and now that I think of it.. they dx with mild fibro but nothing else. I had the same symptoms as I do now, but MUCH more severe. In fact, I almost fainted once when I stood up at work. I went on a gluten free diet and within 4 weeks, all the symptoms were gone and I felt great.

So now I'm wondering if I either have multiple AI diseases or if I was misdiagnosed all along. I'm going through hell to get my med records from AZ over to DE because I was my neuro and rheumy to see I went through this twice before. Both times in 2007 and 2008 the neuro told me I was exhibiting signs of possibly have a brain tumor (!) but nothing showed of course. I guess I'm a little more prepared now for when I see my new neuro. I guess the good thing is now they cannot blame the symptoms on my thyroid or gluten!!

Went to my Rheumy yesterday.. things are ok. He took me off all my NSAIDS due to severe abdominal pain and we are waiting until I see the gastro to decide if I can take them again. He thinks I may have an ulcer or some intestinal issue. The joint pain has been so severe off the Lodine so he prescribed oxymorphone. While there I went over a lot of my recent symptoms: balance issues, falling and tripping, cognitive issues (I'm getting confused very easy now), I have a slight stutter sometimes, and sometimes I have difficulty spitting the words out. I open my mouth to talk but it's almost as if the words are caught in my throat. I've also been having constant dizziness that doesn't feel like vertigo. He referred me to a neuro and I can't get in until April

Now the interesting thing is that I was diagnosed with Graves in 2007 and Celiacs in 2008 and both times I had the EXACT same symptoms I mentioned above. In fact, if I didn't have the joint pain, rashes and hair loss, if feels like deja vu from 2007 and 2008. Both of those disease presented the exact same way.. dizziness, lightheadedness, confusion, stuttering, tripping and difficulty processing information. For my thyroid they put me on the lowest dosage of methamizole and my thryroid levels were normal within weeks. I have been off any thyroid meds for 4 years which is highly unusual for the disease. With the Celiacs I saw every type of doctor and had 60 vials of blood drawn in 3 mos before getting a dx. I saw a neuro then who did tons of tests and now that I think of it.. they dx with mild fibro but nothing else. I had the same symptoms as I do now, but MUCH more severe. In fact, I almost fainted once when I stood up at work. I went on a gluten free diet and within 4 weeks, all the symptoms were gone and I felt great.

So now I'm wondering if I either have multiple AI diseases or if I was misdiagnosed all along. I'm going through hell to get my med records from AZ over to DE because I was my neuro and rheumy to see I went through this twice before. Both times in 2007 and 2008 the neuro told me I was exhibiting signs of possibly have a brain tumor (!) but nothing showed of course. I guess I'm a little more prepared now for when I see my new neuro. I guess the good thing is now they cannot blame the symptoms on my thyroid or gluten!!

Anywho, just wanted to vent a little.. thanks :P

Hi There,

It is a good thing you are going to see the neuro. Hopefully he/she can clear things up for you.

I did want to comment on something you said. I am not sure if you know it or not but both of the things you were diagnosed with are AI diseases. I am going to post a link to a list of 63 AI diseases that we know of. The signs and symptoms can overlap and, as I am sure you have read, many of us have multiple diseases. Hopefully this information is helpful.

I have neurological symptoms and I've been tested for everything from spinocerebellar ataxia to MS, but everything always comes out to be negative.
I did test positive for Sjogren's, and it has some neurological manifestations - http://www.sjogrensworld.org/mandel.htm
I've learned that neurological issues just go with AI diseases.
Good luck with figuring yours out.
Hugs,
Marla

The Following User Says Thank You to Nonna For This Useful Post:

Thank you so much. One of the things I have always said is that is so frustrating is for Dr's to see how we feel since they qualify and quantify everything with tests. I just want them to have some test where they can empathize and say "oh wow, I get it now". But it seems that sometimes the "human" element is gone from patient/doctor care, unless you are lucky to find a good doctor.

Marla, it's interesting that you mentioned ataxia because when I got my Celiacs dx the neuro said after the fact that he thought I had gluten ataxia. That the gluten was so built up in my body and undigested that it caused the neuro symptoms. It definitely fit at the time, but now that I am gluten free, something else is obviously there.

Thank you so much for the support. Sometimes it's just nice to know I'm not alone.

Yes, I've heard about gluten ataxia. However, I don't seem to have any gluten problems. My mobility problems seem to come from a combination of Sjogren's and Spastic Paraplegia. The neurologist denied that Sjogren's could cause neurological problems and told me that there was nothing wrong with me - Ha!
The otolaryngologist who treats me for Spasmodic Dysphonia figured it out. He pointed out that the SD is a dystonia of my vocal cords - they spasm uncontrollably. He thinks that the constant spasming that I have in my leg muscles is also a dystonia, called Spastic Paraplegia. I think that he's right, but the rheumy ignores me, and the PCP thinks that I'm a hypochondriac. I've given up on them, and I'm just dealing with it.
I hope that you have better luck.
Hugs,
Marla